Rett Syndrome: Speech and Communication Explained

Communication is a key part of being human, allowing people to share their thoughts, feelings, and needs. But for many people living with Rett syndrome, their ability to communicate is significantly impaired. This difficulty with communicating can create challenges and negatively impact their quality of life.

Most people with Rett syndrome become nonverbal, with only about 3 percent to 5 percent of people with the condition retaining some form of functional language. That said, through speech therapy and practice at home with family members and other caregivers, many are able to develop nonverbal communication skills using facial expressions, body movements, and gestures. They can also learn to use eye gaze technology, symbol-based systems, and other types of augmentative and alternative communication (AAC) tools when provided.

The loss of speech and communication skills is difficult to navigate, but it’s important to keep believing in the ability to learn how to communicate. In fact, researchers are beginning to realize that those with Rett syndrome may actually understand much more than they can verbally communicate.

Here’s what you need to know about the impact Rett syndrome has on speech and language skills and what can be done to boost communication abilities.

How Rett Syndrome Impacts Speech and Communication

Rett syndrome is a neurodevelopmental disorder that impacts the way the brain functions. When a child is around 6 to 18 months of age, they may begin to show signs of Rett syndrome. The first symptoms may include less eye contact and a loss of interest in the people and playthings around them.

They may also start to regress or lose skills they’ve already developed, like babbling or saying words. For instance, some children will learn as many as 20 words before regression occurs and all of their language skills are gone. In place of the lost language skills, they may start to scream or cry, sometimes for no apparent reason.

Many children with Rett syndrome also lose control of their eye movements and have challenges with gross motor skills like moving their arms, hands, or head. Because each of these skills is used when communicating with others, losing the ability to control them can further complicate communication abilities.

By the age of 10, the neurological condition may appear to stabilize and their hand movements may improve. They may also make more eye contact. But they may still grind their teeth and have breathing irregularities, which can continue to interfere with communication. In order to communicate, most people with Rett syndrome need ongoing support from family members and regular therapy with a speech-language pathologist who can introduce them to a variety of communication devices or AAC strategies.

What Is Augmentative and Alternative Communication?

Because people with Rett syndrome are often nonverbal, they need another way to communicate. Most will use some form of augmentative and alternative communication — tools that allow them to communicate without speaking.

There are both low-tech and high-tech versions of AAC. High-tech options might include specific devices, such as an assistive technology device that tracks eye gazes. But these options can also include using an app on an iPad or a tablet to communicate or using a speech-generating device. Meanwhile, low-tech options might include making facial expressions, using gestures, or pointing to pictures, photos, or written words.

Not every AAC tool works for everyone, but a speech-language pathologist can help recommend which might be the most useful. Sometimes the person with Rett syndrome may use multiple methods for communication. The goal is to use AAC to help them communicate their wants and needs while improving their receptive communication skills — or their ability to understand what others are saying.

It’s also important to note that not every tool is covered by insurance. Fortunately, some government programs can help you get high-tech AAC options when insurance and self-funding aren’t options.

How Clinicians Support Speech

As soon as a person is diagnosed with Rett syndrome, they should begin getting speech therapy from a speech therapist who is familiar with the condition. They will develop communication interventions that work best for the individual. The goal of speech therapy is to support and improve communication skills based on the person’s age, abilities, interests, and needs. Then, as the person grows and develops, the therapy will be adapted so it’s still applicable.

Most of the time, the speech therapy will center around receptive communication. The speech-language pathologist will also work on expressive communication, most often with some form of AAC. They will also help educate family members and other caregivers about the person’s communication challenges, help them set realistic expectations, and teach them how to use the communication system that’s most applicable.

Overall, the focus of speech therapy includes language stimulation, which involves talking to the person with Rett syndrome while going about daily activities. This might include everything from cooking and feeding to dressing, bathing, and playing. The speech therapist may also work on improving eye contact and gazes so that the person with Rett syndrome can learn to gesture with their eyes. The speech therapist may also work to increase the person’s ability to focus on different types of stimuli and develop their thinking skills.

Tips for Improving Communication in Every Day Life

People with Rett syndrome often understand a great deal more than people realize. In fact, one study reported that many parents say their children have very high levels of receptive language, or the ability to comprehend what others are saying. Where they struggle is expressing their thoughts and feelings.

For this reason, it’s important that people with Rett syndrome have communication partners who are willing to interact with them regularly. Here are some tips on what communication partners and family members can do to boost communication skills.

• Acknowledge every attempt to communicate, including random vocalizations, body movements or hand gestures, and eye gazes.
• Interpret these actions and movements as intentional attempts to communicate, and treat them as meaningful.
• Be intentional about giving the person with Rett syndrome the opportunity to initiate communication.
• Pause and wait 30 seconds or more for the person with Rett syndrome to respond to a comment you make or question you ask.
• Believe that the person with Rett syndrome can learn to communicate but that the process takes time.
• Think of learning to communicate like learning to play an instrument — people have the ability to do it, but they need to be taught how.
• Choose a communication device or system that will help the person with Rett syndrome communicate.
• Use low-tech versions of communication like pictures, slides, or cards until the device arrives.
• Use reading as an additional tool for communication by pointing to pictures on the device that correspond with the story.
• Be patient with yourself, and with the person who has Rett syndrome, because learning to communicate effectively is hard work and takes time.
• Take videos of the person’s communication efforts to share with the healthcare team and to help others see how the person communicates.

Join the Conversation

On MyRettTeam, people share their experience with Rett syndrome, get advice, and find support from others who understand.

What has been the most effective approach in supporting the communication efforts of your loved one with Rett syndrome? Let others know in the comments below.